Finding out as a young college student that his estranged father had been crippled by dementia was hard enough for Bryan Gaines.
The decline in Melvin Gaines’ mental ability was one thing to grapple with, but having to provide around the clock long-term care for a man he barely knew, heightened that challenge.
“The first thing I said was there’s no way in the world that I could deal with this. I felt like this is my father, but I’m in school, and all these scenarios went through my mind,” Gaines stated.
Gaines reluctantly accepted the fact that he would have to take the lead. “I thought about how he wasn’t ever there for me, and I never had a father to talk to,” he said. According to Gaines, he endured a horrible, young life of pain, which included molestation and loneliness. He blamed his father for not being around, he lamented.
His Grandmother’s Advice
Gaines said the news was further exacerbated by the reality his father had no resources to help provide the quality of care he needed. His father would eventually get Medi-Cal, but died very shortly after.
According to Gaines, it was the counseling of his grandmother, a huge influence in his life, that inspired him to step up to the plate to take care of his father until his last breath.
While dementia had reunited the father and son, it also caused their spiral into poverty, particularly Gaines, Sr. “I used everything he had plus what I had to take care of him, to make all of this work. I lost so much behind this. I mean, I am almost poverty-stricken behind trying to take care of him, taking my savings and my money that I earned on my job, all the things that I had to take care of because he ran out of money,” Gaines stated.
Worried About Mother’s Care
Eileen Thompson has cared at home for her mother who is over 70-years-old. Her mother has congestive heart failure, hypertension, and diabetes, which all exacerbate her health and financial situation. However, living at home is important to her, Thompson shared last fall during a national conference on aging.
Thompson expressed concern about maintaining her mother’s quality of life and about receiving resources she needs in the new political climate under President Donald Trump. She was especially worried about attempts to repeal the Affordable Care Act (ACA).
Former President Barack Obama signed the ACA in March, 2010. A key benefit for seniors is that the law provides help with prescription drug costs.
“We’re going to be prayerful, and be vigilant. I think advocacy is important, because we’re at the point now where my mother, fortunately, has private insurance, but that’s also coupled with Medicare, so most of her visits are at zero out-of-pocket for her,” Thompson stated. According to Thompson, her mother has Medi-gap insurance, which pays copayments and other charges not covered by Medicare.
“Without that additional Medicare component, that could probably change, so we are watching. We are being mindful. We are trying to speak with our representatives and see exactly what’s going to happen with that,” Thompson continued.
The organization Alzheimer’s Greater Los Angeles [http://www.alzgla.org] (AlzGLA) recommends putting financial plans in place as soon as a diagnosis has been determined. But what does that mean for people like Bryan Gaines?
An estimated 44 million people in the United States provide unpaid family care, and 75 percent of them are employed, indicates the National Alliance for Caregiving [http://www.caregiving.org] According to NAC and AARP, nearly 70 percent of working caregivers must make workplace accommodations, such as modifying hours, taking a leave of absence, choosing early retirement or turning down a promotion to a more demanding job.
37 Billion Unpaid Care Hours
AARP and the nonprofit Respect a Caregiver’s Time, or ReACT (a coalition that addresses caregiving challenges facing both employees and employers) have been encouraging employers to provide caregiver benefits.
Their 2016 joint report [http://respectcaregivers.org] titled, “Determining the Return on Investment: Supportive Policies for Employee Caregivers,” stressed that family caregivers create substantial economic value for society.
Also, a 2015 study estimated that in 2013 alone, approximately 40 million family caregivers in the United States provided 37 billion hours of care to an adult with limitations in daily activities, translating into approximately $470 billion of unpaid contributions.
Research suggests that 45 percent of employed family caregivers provide often-complicated care previously provided only by formal medical and nursing care. This includes managing multiple medications, caring for wounds, preparing special diets, using medical monitors, operating medical equipment, conducting care coordination, and hiring other paid help for family members with multiple chronic physical, cognitive, and behavioral conditions, the document continued.
According to the Alzheimer’s Association, while costs may vary depending on geographic location, some common care costs include ongoing medical treatment for Alzheimer’s related symptoms, diagnosis and follow-up visits; treatment or medical equipment for other medical conditions; and safety-related expenses, such as home safety modifications or safety services for a person who wanders.
The group adds that costs also include prescription drugs, personal care supplies, adult day care services, in-home care services, and full-time residential care services.
A data snapshot of the average costs for long-term care services in the United States posted on the association’s website [www.alz.org] stems from Genworth Financial’s 2016 Cost of Care Survey, which included statistics from home care providers, adult day healthcare facilities, assisted living facilities and nursing homes:
“When we talk about poverty, you can start off with dealing with this disease and end up going through property as a direct result of trying to care for someone,” Gaines said. “You’re trying to juggle and work your job. I know many people that have lost their jobs as a result of trying to be a caregiver, and that’s just part of it. I know people that have gotten rid of their homes to move in with their mom,” he stated.
According to Gaines, many working, first-time caregivers initially hire home care services, which depletes their resources, eventually forcing them to take on caregiving duties themselves. Some may qualify for home and community based care, such as the In-Home Supportive Services (IHSS) program, if they qualify the low-income Medi-Cal program.
Depending on income, the cost of services may be covered entirely by the state, or program participants’ may be responsible for cost-sharing if their incomes exceed the monthly limit. Medi-Cal sets the hourly rate for IHSS services. The American Elder Care Research Organization estimates costs being between $12 and $17 per hour. Typically, the monthly IHSS cost is about $2,200, but state rules say it cannot exceed $3,500 per month, according to AECRO.
Service providers assist with daily living activities, such as bathing, dressing and transferring, housekeeping, laundry, meal preparation, personal care, shopping assistance for essential items, supervision, and transportation assistance.
“Everything is expensive, from the insurance to the Depends [adult incontinence underwear], and if you don’t have access to these services and the person doesn’t necessarily qualify for it, if they get $1 more than they’re supposed to — it’s a struggle. It puts people in poverty,” Gaines argued.
He added, “When you’re dealing with poverty, and you’re struggling, trying to figure out whether you’re going to buy medicine or buy food, there’s no quality of life there. Everybody’s frustrated.”
The system’s practice is to have caregivers who live with loved ones they are caring for to just double the task, Gaines said
For example, he went on, “When the social worker comes out, and sits there, and looks at the time that’s going to be allocated, they say, ‘okay … you have breakfast, too, right? So you can fix her breakfast when you fix your breakfast … You can wash her clothes when you wash your clothes’, so all that time, that’s all cut off because you are already doing some of that work,” he said.
“Therefore the amount of money that’s allocated to you is substantially less than what you’re used to getting, so many people end up losing their cars, losing their homes, and all kinds of things trying to provide care for a family member,” Gaines added.
(This article was written/produced with the support of a journalism fellowship from New America Media, the Gerontological Society of America and the Retirement Research Foundation.)